Day 1: swallowed tiny beads that were circles
Day 2: swallowed tiny beads that were circles with a line through the middle
Day 3: swallowed tiny beads that looked like Mercedes emblems
Day 4: abdominal x-ray
Day 6: Abdominal x-ray
So no, he didn't swallow the capsules with lots of beads. Rather my way-smarter-than-me mom opened the capsules per the doctor's advice (Garrett will not yet swallow pills or capsules), she opened them and discovered that he would eat them in his oatmeal....HOORAY!!! So the worst part was the extreme trauma of the x-rays. He has had many of them in the past, but he was an anxious mess of a crying panicky kiddo. It was horrifying. But he powered through both days, and we waited.
Last week, the surgeon's sweet nurse called, as did the G.I. specialist, to tell me his colonic transit time, or time for things to pass from beginning to end of the colon, was 70 hours. Normal is 30 hours. Uh-oh. So I thought, "Okay, so he is slow. We know that. But what does the surgeon get from looking at the images and studying the data???" What I saw on the Day 6 x-ray was that all three days of beads were equally dispersed throughout the colon. I wondered if they shouldn't be more grouped, like Day 1 all near one another farther down than Day 2, and so on.
Then today the surgeon called to discuss the findings. Here is the abbreviated version of his comments:
Garrett's colon is diseased from beginning to end. When kids have a section that is not functioning well, he would normally take out the bad part and expect things to improve. Garrett has no good parts. He doesn't feel like it is time to remove the colon and attach the end of the small intestines to the rectum, though someday that may be the case. He thinks that for now he should leave the colon and do the ACE http://my.clevelandclinic.org/services/antegrade_colonic_enema_surgery/hic_understanding_antegrade_colonic_enema_ace_surgery.aspx (click link to read about it) instead of the cecostomy. The cecostomy was the button going from outside his body near his hip bone below the waist, into the cecum. I initially preferred that as it was about a one hour procedure vs. the ACE being 2.5 hours. With anesthesia already a riskier than usual deal with a Mito kid, I wanted to avoid the long O.R. time. The surgeon said he does the ACE in an hour and that he thought that having only a stoma (fancy word for "hole") inside Garrett's belly button where we thread the tube to get the enema fluid mixture into the cecum and flush his colon from top to bottom, was much better than Garrett having a button that can irritate the skin, leak, and get pulled out when he takes his pants up and down over the site. This makes sense. Also, I didn't want to have to go back to the operating room to reverse the ACE should it not work, but the doc assures me it isn't a big deal. If a button comes out from a cecostomy site, it is a mild emergency, meaning you have to rush the kiddo to the hospital and get the new one put in as soon as humanly possible. That would be a mess!!! I also asked lots of questions about his colon possibly getting better. He was not at all optimistic. I asked about if the constipation meds could have caused it. He thought not. But them my sweet mom reminded me that she thinks he has had this problem since he was an infant. Seems I had forgotten that even when exclusively breastfed, he would struggle with stool that was like dry clay. I barely remembered!! But she is right. The colon is a mess, and trying this procedure will be the next step in attempt to improve Garrett's quality of life as well as internal health. Having waste hang out in his colon like it does is nothing but a recipe for future disaster.
So looks like as of today, surgery will be August 23. Should be interesting since I am starting a part time teaching job and we have family coming in the 25th. Oscar's parents will get here two days after surgery, and that might be just the people to have here with my parents to encourage Garrett and help him move forward through recovery. Plus, I have some additional help at the hospital so I can teach my two morning classes without taking time off! Blessings abound!! I even think Grouchy will be home!!!! I believe the distraction of teaching two hours on weekday mornings and being involved with the FFA activities will be a good outlet for my anxious energy, and I will be able to have the weekend off and be with Garrett as much as possible.
I am looking into how this will work, and it sounds like Garrett may be admitted a couple of days early for a hospital clean-out of his bowels. That is bound to be a barrel of monkeys!! My saintly mom will probably take the shift in the mornings while I teach. I have had so many friends and family inquire about times and dates and such, in hopes of dropping in to visit/distract Garrett. All I can say is , "PLEASE BRING ON THE DISTRACTIONS!!!" I will post a surgery time when we have one. He has asked for his dog, Sammy to come stay, and while I think staying overnight isn't an option, I am sure we can take her for a visit!! She adores him!! The big challenge will be keeping him in a room for several days. I hope he still finds it novel to have a television and remote on a long arm that comes to his bed!!! PLEASE!!!
So I ask for your prayers that this is the right thing at the right time. The surgeon said we could wait, but this is going to be what's in the future, so we can do it now and get it healed and hopefully working to full benefit, or we can continue to fight the battle medically through meds and know this needs to get done. Apparently, the ACE has changed so many lives for the better, and I hope it gives Garrett what he needs. I guess now is as good of a time as ever. I pray we are making the right decision!!!
Godspeed and many, many thanks!!
Clara-Leigh
P.S. The feeding button is not recommended at this time since when Garrett is having bowel movements more routinely, he is eating more....PRAISE!!!! However, in this photo, you can see how tiny his little arms are.....but how great is his smile and love for his furry companion!!!!!
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